I’m currently in Orlando, Florida at the Roche Diabetes Social Media Summit (more on that tomorrow!). Throughout this week and the beginning of next week, a few folks in the diabetes community have chipped in to help babysit Lemonade Life. I’ll have a couple of posts this week, but mostly you’ll be hearing from some awesome bloggers who are ready to share their story with you.
Today, I want to introduce you to Kaitake, an up and coming diabetes blogger from New Zealand. While I have not had the pleasure of visiting New Zeland, my fiance Erik spent a semester there studying abroad, so I jumped at the chance to have Kaitake share her story here at Lemonade Life.
I am an old hand at diabetes (T1 for 22 years, Dx at 5yrs), but still a noobie at this blogging thingymajig. 😛 It has been absolutely mind blowing to connect with folks around the globe going through similar situations to me. And it has restored my faith in myself and the world at large.
So, about me. Well, you already know that I’m diabetic. Did you know I live in New Zealand? The land of the long flat white. 😛 Or that I’m married to a wonderful fellow 18 years older than I? Perhaps you didn’t know that at 27 years old, I am a step-Mum to 3 delightful kids, the eldest of which has just got his drivers licence!
What made me start blogging? Well, Hubby and I have decided we wanna start a family. Together. Our own kids. Only one little problem was a little operation Hubby had while in his previous marriage. So my blog chronicles our achingly-slow progress through doctor’s visits, and eventually, we hope, IVF. Of course, diabetes always wants to be centre stage, so it’s made things “interesting” for me. My diabetes care team (Endo, diabetes nurse, GP, dietician) went into overdrive as soon as I dropped those 3 little letters into conversation: I.V.F. It would almost be funny if it wasn’t so disastrously serious. 😛
They started seriously looking at my blood sugars. Talking about getting an insulin pump. Loaning me a CGM. All this stuff I’d only ever heard of in American diabetes blogs. It has been overwhelming just considering it. (These things still seem too distant, like a flying car or something. I’ve only ever seen one insulin pump, and that was for less than 20 seconds!)
New Zealand is a lovely country, and the health system on the whole seems reasonably fair. Most people here don’t have health insurance. Don’t need it. The health system gives me nearly free access to all my doctors, and all my prescriptions. However that means that expensive stuff like a pump, or CGM are pretty much out of my reach because they’re not funded.
But maybe, if I get pregnant, my doctors can magically loan me some of these fancy gadgets? They all agreed that I would need a pump. Fine, but one thing that struck me was how I was getting all this increased level of care – suddenly – but only since I told them I wanted to get pregnant. It seems a bit strange to me that my doctors would only actually start taking me seriously once I plonked a possible pregnancy in their laps. Shouldn’t all diabetics, no matter what stage in life, get the same care? Care that includes medical professionals talking together and working together for the good of their patient. Treating their patient like a human being and even a friend. And striving to provide the best possible care no matter the cost? Wouldn’t that be lovely?
Prior to all this IVF stuff, my diabetes care felt like it was just coasting along. Throughout my childhood, I had what my doctors called “perfect numbers”. They were always incredibly happy. I got consistent low HbA1c tests. Everything was good. Once I became a teenager things started to gradually unwind. Although I stillattended all my appointments, I no longer had any contact with other diabetics. I was too old to go to the diabetic-kids camps which I had enjoyed. And living in a small city meant there was not a single other diabetic kid at ANY of the five local high schools. Or if there was, I sure never met them!
My doctors were not much help, they didn’t understand what it was like to be a teenager with diabetes. I was trying my best to look after myself, but I honestly had no useful diabetes-related education for about ten years. I was basically treating my teenage diabetes using tools and techniques I had learnt mainly from my Mum, when I was still a child.
All this meant that my HbA1c gradually climbed up to an all-time high of 8.1%
Two things have enabled me to get back to 6.7%. I credit both the fact that I told my diabetes care team about my baby-makin’ plans (and they subsequently started to actually do their jobs!), and secondly, I would NEVER have made such incredible progress without the support and knowledge from the D-OC.
I didn’t know what an insulin-carb ratio was. The diabetic bloggers knew! I had no idea what was involved in a diabetic pregnancy. Several lovely ladies were writing about that very thing! I wasn’t sure what I was doing was diabetes “best practice” anymore. My new friends around the world gave me help, tips, and encouragement. I have found that I am in a special little sub-segment of the diabetes online community. There are not very many folks out there talking about diabetes and IVF. My challenge to myself is to find more of these people and learn from them.
Allison’s post about how we define ourselves made me think about my life. I am a wife, a daughter, a sister, and a step-Mum, a diabetic, a designer, a gardener, an amateur photographer, and now I can add labels like “infertile” and “ttc” to that list. It’s very interesting and has made me stop and consider my life. I’ve recently been made redundant, so I’ve had plenty of time to think. I have decided I am happy, and anything else will just be gravy.
Beautiful photograph, Kaitake, and thank you for sharing your story!
A few months ago, when Medtronic Minimed announced their new Revel Paradigm system, I was very eager to give it a try. I had been waffling between staying on the Minimed system and switching – partially – to a DexCom CGM while staying on the Minimed insulin pump. Difficulties abounded with the Minimed CGM, as you have probably heard if you’re part of the D community, and I was frustrated that it was not working as well as I would have desired.
But seeing as how I have invested ten years of my life into this company, I thought, Why not give them the benefit of the doubt?
After a series of emails with the folks at Medtronic Minimed’s PR team (who are lovely folks, by the way), I have entered into an agreement with them as followed:
I received a new Revel paradigm insulin pump and 3 months of sensors gratis in exchange for contributing a series of articles to the Minimed website about life as a person with diabetes who uses an insulin pump. I will also participate in a consumer focus group at Minimed’s headquarters in Los Angeles sometime in the next year. I am not required to write about or endorse the Minimed insulin pump system on my blog, and as far as their concerned, I never have to write about them ever again. Of course, I will, which is why I am telling you about my new agreement with them.
Medtronic Minimed will never review or edit my blog posts and they have no control over what I say. In fact, I could say I hated the Revel Paradigm pump and there is nothing they can do about it. If I do choose to stop using the Minimed CGM system, I am free to do so as I wish.
I have always supported Minimed and I have always thought they were a great company. A little slow, perhaps, but well-intentioned. My hope is that with my feedback and participation, I can voice concerns as a patient advocate that will be listened to and considered during future upgrades.
Edit: I briefly wanted to make one addition. Medtronic is also a client of my company, WCG. I do not in fact work on any of the Medtronic business. The Revel Paradigm insulin pump is not a project that my company works on, so it does not pose a conflict of interest. If, at some point, I am assigned to work on Medtronic Minimed or another diabetes product that I would blog about, I will disclose that relationship. While there are diabetes-related products that I work on at WCG, I have not blogged about these products and I will disclose if I do (similar to how I disclosed that Nikon was a client while also being an owner of a Nikon camera).
In addition, I always wanted to touch on my role with Roche Diabetes. I participate on the Roche Diabetes Volunteer Advisory Board. I am not paid. During the Roche Diabetes Summit, Roche pays for my flight, my hotel and my transportation to the event, and they pay for any incididental meals that may occur during my travel. They provide meals while we were are in session. They do not review any blog posts nor require any blog posts promoting or endorsing their products (I do not, in fact, use any Roche products at this time).
I appreciate the opportunity to work with pharmaceutical companies in a completely transparent and ethical manner. I am thankful that I have the opportunity to use products and to educate my readers on what those products are like in use. I am also grateful that pharmaceutical companies are working with many patient advocates and influencers in our community in an effort to better understand our wants and desires.
I missed a very important anniversary this month. I missed my three year anniversary of moving to the East Coast. I actually didn’t even realize I had forgotten until I was chatting with a new girl in the office yesterday and she asked me how long I had been living here. That’s when I realized that I had plum forgotten that June 14 was my three year anniversary of moving to New Jersey.
When I tell people I moved here from Oregon, people often react with wide eyes, exclaiming, “Really? It must be really different there.”
New Jersey certainly is different from Oregon, but there’s a lot of similarities too. Both states have restaurants and gas stations. Both states speak the same language (most of the time). Both states have Target. I drove to work and dealt with traffic. I didn’t have to pump my own gas, so in my world, New Jersey and Oregon are practically the same thing.
I think moving to New York City was more of a culture shock, just having so many more different types of people that you have to deal with and adjust to interacting with on a daily basis. Having lived in New Jersey for two years, I came into Manhattan several times a week until I officially became a resident. Manhattan didn’t feel as strange and scary as I think it must be for people who just move here directly. I was used to getting around on the subway, I was used to how atrociously expensive this place is, and I was used to restaurants that cram you in like sardines.
Sometimes people ask me if I miss Oregon, and it’s strange because most of the time, I don’t think about Oregon. I miss my family, that’s for sure. I wish Oregon was closer so I could visit it more. I certainly miss it more when I have just returned from visiting. But I don’t want to live there right now. I love living in New York City. I love living three blocks from Central Park, I love all the restaurants that are in my neighborhood, I love that I can walk a block to the movie theater. I love that people get so excited about New York City and it gets me excited too. When I see a red double-decker tour bus, I think, Wow, I get to live in a place that other people come to visit on their vacation.
Of course, it’s not like living a vacation. I work full-time. I have to go grocery shopping and stay within budget because it’s easy to spend a lot money when you live in such an expensive place. I have chores to do and pay bills on time.
But when I walk down the streets of this city, I think, “I love it. I still love it.”
I don’t know if Erik and I will stay here forever. A lot of people also ask us if we are planning on staying in the city or where we hope to end up. There are a lot of places I would also like to live, and there are certainly “easier” and “nicer” places to live and raise a family. But we are still many years away from planning a family, so leaving the city doesn’t seem necessary unless we were planning on popping out some babies. In this economy, I feel like it’s difficult to choose to move somewhere new without a guaranteed job and there isn’t a place where we feel compelled to risk so much.
Besides, doesn’t it take something like 7 years before you’re considered a true New Yorker? I may have to stay until then at least.
#60: Going on vacation
Next week, I am going on vacation. Real vacation – not one of those weekend getaways I sometimes take just to get out of dodge and off this crazy little island. I will be in Oregon, partially to plan my wedding and partially to just hang out and enjoy the Fourth of July, for six days and I cannot wait. But more than anything, I love vacations where I am going somewhere new. England was by far the best vacation I ever decided to go on. I don’t feel like I’ve really taken solid vacations since graduating from college, though. Most of my time off is spent going to Oregon to see my parents, which I definitely consider a vacation (considering they do all the cooking), but it’s not the same as going to Europe or some other far off land. I did go to Orlando for the Children with Diabetes conference in 2008, which was fun. But most of my traveling has been on the weekends, and with ten vacation days a year, I really don’t have the flexibility to go on a vacation somewhere new because I am visiting my parents whenever I can. I am looking forward to my super-sized vacation next summer: my honeymoon! We don’t have any solid plans yet (it’s a little early), but we’re contemplating Scandinavia. Erik is part Norwegian and I’m part Swedish, so we thought that would be fun. And in July, Scandinavia will be much cooler than many other parts of the world, yet still nice. Where is your favorite place to go on vacation?
How the heck have I not written about meet ups before? Sheesh! This should have at least one of the first ten or so things I came up with. As you can see from yesterday’s post, I luurve meet-ups. All kinds, diabetes and otherwise (seriously, if you’re in NYC, hit me up!). I have been planning and attending meet-ups for about three years now, and I attend them quite frequently. It’s always great when you get a bunch of people together who don’t always get to see each other very often. I have always wanted to go to a twentysomething blogger meet-up, but sadly I wasn’t able to make it to Vegas in May. Last summer though, I went to a dinner with some twentysomething bloggers, including some of my fave like Doni, Ashley and Lacey, which was super fun. Maybe I should spread my wings and become a twentysomething meet-up organizer too?
Next week, I’ll be attending the Roche Diabetes Social Media Summit which is under the guise of Official Diabetes Business, but in reality it is just my excuse to see some of my favoritest people in the world. I feel so bad that we can’t invite the entire diabetes community to Roche, but somehow I don’t think the fire department would give us permission to have a bazillion people in one room.
(I’m in the 3rd row back, towards the right, wearing a purple shirt)
Although this post is from the POV of someone with diabetes, I fully believe this advice can be translated to any interest, whether it be a chronic illness, hobby or belief.
Over the past year or so, I’ve noticed that my reputation for being a meet-up organizer has risen dramatically. In fact, I was asked by a good friend to help organize a meet-up at an event I wasn’t even attending.
Often times, I read blog posts from people who wish they knew more people with diabetes in their area, or they see the meet ups that I organize and wish there was something similar where they are. Well, I will tell you that I am a big believer in the saying “If you want something and it doesn’t exist, don’t wait around for someone else to do it” because you never know when someone else will get around to doing something that you can do yourself.
I have always had a diabetes community of some sort. I attended diabetes camp in high school, participated diabetes fundraisers, and volunteered at the JDRF chapter office and at events. I also volunteered at a quarterly diabetes support group. At each place, I was able to meet others with diabetes and my network slowly started to grow, even before I started blogging in 2005.
Get to know people online. Many forums and Twitter will allow you to search for people in your area. If someone is within driving distance (and think broadly with this), make a note of who they are. Start chatting with them, and form a relationship. It makes the initial in-person meeting a seamless transition. Most of the people I know offline are people that I originally met online (including my husband-to-be). I have been meeting people from the Internet since I was in high school and it’s relatively safe – if you’re not an idiot. Tricks of the trade:
- DO NOT INVITE PEOPLE TO WHERE YOU LIVE. Duh.
- Don’t even invite them to your neighborhood.
- Go someplace where there are a lot of other people. And security cameras. Restaurants, museums, and shopping malls are all places where I have hosted meet-ups. They also give you something to do if you’re like “Awkward silence!”
Get to know people offline. If you’re not active in your local diabetes community organizations, get moving. Yes, I know the old “But no one cares about adults with diabetes” reasoning runs rampant. Everyone cares about people who participate. So lace up your sneakers and volunteer to hand out materials at a Walk to Cure Diabetes or volunteer to do registration at the annual gala. Attend a Diabetes Expo or volunteer for a local health fair with your clinic. Not only will you meet people, but you’re also helping the cause. Slowly you will meet others with diabetes, both children and adults. One of the first adults with diabetes I ever met was on the Oregon Chapters Board of Directors. Her name was Michelle and she wore an insulin pump just like me. And remember, child advocates with diabetes grow up to be adult advocates with diabetes (wink, wink).
Time and distance are no object. Most of the meet-ups I’ve hosted or participated in were not in my neck of the woods. I travel, and when I do, I always try to figure out who lives where I’m going. I make lists of people who live within driving distance of the city. You have to believe that there are other people out there who are just waiting for an opportunity to attend a meet-up, and more likely than not, you’ll even have some long distance travelers come out of the woodwork. Invite everyone you can think of. The worst thing they’ll say is “I can’t come.” I have had people drive hours or take a train to attend a meet-up. You’d be surprised how many people will try to come.
Pick a spot and time that is easy for you. You will never be able to please everyone, so don’t even try. I have tried the “plan by democracy” but I soon realized that in the meet-up world, this is not a democracy, this is a cheerocracy (see also: Bring It On). Be in control; it’s the only way to maintain some semblance of a plan. Some of the best meet-ups I’ve ever been to only had a couple people come and they were still wonderful.
Start small. You don’t have to host a meet-up, you know. Meeting one person is absolutely acceptable in the land of hanging out offline. My dinner and spontaneous joy ride around San Diego County with a certain Ninjabetic was one of the most fun times I’ve had. In and around New York City, there are several people with diabetes who I have met, either through the ACT1 Diabetes group or my blog. Now we go on double dates and talk about things not related to diabetes, like wedding planning and how completely unattractive leggings are on women who aren’t Kate Moss.
Start big. There’s no reason to limit yourself! You might not think there is anyone out there, but those three million people with type 1 diabetes don’t exactly live in a commune in the Appalachian mountains. They are everywhere! A couple of suggestions:
- Meetup.com: The New York Type 1 Diabetes Meet-Up group was launched here and although it’s gone through a couple of iterations, it is now a successful monthly dinner meet-up group, with approximately 15 people attending each month. While we have our regular attenders, there are also lots of new folks who come, so there is always someone to talk to and connect with for the first time. Meetup.com currently lists 81 Diabetes Meet-Up groups. Maybe there is one near you!
- Grassroots based: ACT1 Diabetes, which is hosted in NYC, and the former Children’s Diabetes Network, which was a support group I attended in Portland, OR, were all started by someone who said “We need this. Let’s do it!” and they worked to promote via clinics, social networks and word of mouth. They picked a convenient location that was regularly available (a conference room at a diabetes clinic) and have slowly grown.
There is no “magic formula” for being a meet-up organizer. Mostly it just takes asking a few people, “So, who wants to get together?” Many people are far more likely to jump on an open invitation to meet others with diabetes than you might think. It is scary to do this when you are opening yourself to people you may not know as well. It may take a few tries before you find your groove. You may have to change times or locations, but trust me, there are hundreds (or a least a couple dozen) people with diabetes who live in your area. I guarantee they are going through the same issues that you are. And for those of you looking to meet people you from the Internet, I will tell you that it does take some investment. Many of us do not live in one central location, but even when I was in high school, before blogging and before Facebook, I had a community of people with diabetes that I could count on. This is how I have built my diabetes community. I hope you will build one too.
Courtesy of Roots and Rings
1. If you could trade lives with another blogger for a day, who would it be and why?
I would probably want to trade lives with a travel blogger, if only so I could go on a vacation! Or maybe a style blogger, like Jane Aldridge of Sea of Shoes, just so I could play dress up for the day (but in trading lives, I would also have to trade bodies, because I wouldn’t fit any of her stuff – she is skinny!)
2. Do you prefer receiving handmade or store bought gifts? Be honest!
I love gifts! I don’t care where it comes from! So long as it is meaningful to the person who purchased it, that’s fine with me. I don’t like when people just randomly pick something up because they have to buy you a gift. Put some thought into it! I have been meandering around Etsy lately, looking for things for the wedding, and I have to say, homemade gifts are certainly growing on me as a favorite.
3. Would you rather camp or stay in a hotel?
I love camping, but if I had to choose, I would stay in a hotel. But Erik and I are planning on camping this summer so it’s not like I’m morally opposed to camping.
4. What’s your favorite comfort food?
Popcorn! I could eat tubs and tubs of that stuff. I also love macaroni and cheese. Mmmm… and ice cream. God, no wonder I’m so overweight!
5. You’re having a really bad day at work. How do you unwind when you come home?
I don’t typically do anything. Complain to someone, or just yell at the person in my head. Then just veg on the couch, watch TV for awhile, and try to get absorbed in someone else’s really bad day.
6. What’s your favorite chore? (Or, the chore you hate the least)
Favorite chore? Doing the pots and pans I guess. It’s easy enough. Least favorite? Anything to do with the bathroom!
7. What got you interested in blogging?
I had a journal on the old Diabetes Teen Talk website, but it wasn’t really going where because it didn’t have comments and I couldn’t update it myself, so there was always a lag time. So I started my own on Blogger after seeing the blogs from a few other people with diabetes. I thought it would be fun.
8. Are you currently reading a book? What is it?
I am reading For Better by Tara Parker Pope. It’s about marriage. Because, as you know, I’m getting married, and what better way to prepare for the rest of my life than to read a book about it!
9. Do you have a favorite artist?
I really don’t, actually, but I tend to like a lot of Italian Renaissance artwork. I am more drawn to photography, actually, but I don’t have a favorite photographer right now.
10. Have you ever met someone famous?
The most famous person I have met is probably Mary Tyler Moore. I’ve met her a couple of times. I met Abigail Breslin and Jennifer Morrison a couple months ago after their Broadway performance of The Miracle Worker. I have also met several Star Trek cast members, like Grace Lee Whitney from the Original Series and Robert Picardo from Star Trek: Voyager.
Last night at my church, my pastor was talking about ways in which we define ourselves. He shared an anecdote about how, when speaking to a group of students, a boy asks, “Since you’re from Dallas, are you a Rangers fan or a Yankees fan?” My pastor responds, “I’m a Christian! But I root for the Mets” as a way to convey that he doesn’t define himself by the “typical” identifiers, but by something far more spiritual than a sports team.
I was intrigued because for most of my time as a diabetes advocate, there has always been a bit of heckling done between those who choose to use diabetes as an characteristic that defines them (the so-called “diabetic vs. PWD” debate).
My pastor said that people have a “controlling” definition that drives their life, their actions and their sense of self. Sometimes it isn’t even something they actually are, but something they want to be: I want to be rich, I want to be thinner, I want to be an astronaut.
You may not actually be these things yet but they drive so much of your thinking every day.
I have never had a problem defining myself as being a diabetic. I am a diabetic, just as I am a woman, a brunette and a fiancee. But I know that there are many people who do not identify themselves as being such. I am more intrigued by how people self-define in certain situations. Some people don’t define themselves by how much money they make or what they look like. Other people do. When I was growing up, it seemed like definitions were such an important part of figuring out “who you are.” There were the band kids, the athletes, the goth kids, the nerds. None of these definitions were probably chosen by any of these folks, but yet that’s how they were come to be known. Even know, I wonder why kind of definitions people would use to describe me.
How do you define yourself? I know that I have control over how I self-identify. I think many of us are preoccupied with focusing on things that are superficial. In New York City, this is ever-present. What we wear, where we work, what we do in our free time, even where we go for dinner is all wrapped up in this “presentation” of sorts, as if we’re on display for people to watch and judge just like celebrities. I’ll be the first one to say that I have no interest in the celebrity life, and the fact that I am even for a nano-second caught up in whether or not someone will judge me poorly for working a 9-5 job instead of being a free-spirited twentysomething really irks me! What I do for a living does not define me any more than whether or not my pancreas functions properly or if I fit into size 6 pants. All of these things are so transient and limited to a certain time and place that if you spent your life identifying yourself with things that don’t last, well, what happens when they don’t exist anymore? What happens when diabetes doesn’t exist anymore? Who are you without these things?
At the end of the day, my pastor’s talk reinforced that there really is only one definition that I should ever be concerned about, only one word that I should place higher than the rest, and that is “Christian.” Even though I have a chronic illness, and even though I know my hair looks best as a shade of brown, and even though I may be engaged or living in New York City or weight a certain amount weight, none of those shape the kind of person I want to be. I may not always live in New York, and I may not always have diabetes, and I may not always work in public relations, and I may not always be married. None of those things have the kind of eternal impact that being a daughter of God has.
So if someone asks me, “Allison, are you a type 1 diabetic or a type 2 diabetic?” I will say, “I am a Christian! But I have type 1 diabetes.”